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Doug Forrester



Dear Congressman Holt,

I wish to thank you for H.R. 1649, and the attempt to address one of the many issues facing people with disabilities each and every day - safety and security.  It is the content of H.R. 1649 that motivates this email today.

H.R. 1649 amends paragraph (67) of §1902(a).  This paragraph addresses services covered under a state plan that are furnished to PACE-1- eligible individuals enrolled with a PACE provider-2-.  Plain language could dictate that DANIELLE'S LAW applies only to those individuals with a developmental disability or traumatic brain injury that are ALSO pace eligible AND enrolled with a PACE provider.  If true DANIELLES'S LAW will not protect ALL individuals with a developmental disability or traumatic brain injury that receive services under Title 19.  This is a concern!

PACE eligible individuals are persons age 55 or older, and most are over 80 years old.  Danielle was a beautiful 32-year old women.  It would be unfortunate to imortalize her name in a law that would not apply to her if she were alive today.  However, of greater concern is the apparent need to micromanage federally funded state developmental services.  Doing so is certainly an indication of more serious and systemic problems.

In most occassions, if not every occasion, a direct care staff providing health-related services under the state plan is required to be certified in First Aid and CPR.  As a past Red Cross CPR/First-Aid instructor I can assure you that "life threatening emergencies", how to identify them, and how to activate emergency services is covered both orally and on the written test.

In 1997 the Centers for Medicare & Medicaid Services (CMS) reviewed California's HCBS waiver services-3-, §1915(c) of the same act.  CMS found, amongst other items, that, "Community care facility staff were generally observed to be inadequately trained as evidenced by several cases in which caregivers apparently were unable to identify conditions, signs or symptoms requiring prompt medical consultation and evaluation [emphasis added], inability to provide basic emergency care and lack of training in procedures pertinent to the resident's condition and previous emergent needs." As a result of this deficiency, and others, CMS imposed a freeze on new admissions to California's waiver and requested that California revise provider qualifications and institute a plan of ongoing or in-service training for providers.  The result was California's 70-hr Direct Support Professional training.

CMS has the authority to mandate conditions, qualifications, and training that will reduce and hopefully eliminate the conditions that led to Danielle's death.  If CMS, under current law, is incapable of holding state services accountable, then the Congressmen and Congress must "speak with a clear voice," and manifests an "unambiguous" intent to confer individual rights"  upon individuals receiving services, from a state plan, under Title 19 of the Social Security Act.  This would allow people like Danielle, and those similarly situated, to hold states accountable by exercising their rights under 42 U.S.C. section 1983. To do anything less is just window dressing.

As I am sure you are acutely aware the public confidence in Congress has waned.  Therefore, I hope you will take a moment to consider these points and avoid the appearance of being just another unctuous politician placating his/her constituents, with an ineffectual piece of legislation.

Santa Barbara, CA

1-Program of All Inclusive Care for the Elderly SEC. 1934. [42 U.S.C. 1396u-4] (a)


3-Health Care Financing Administration (Control # 0129.91

by pes37262 on August 23 at 1:07 AM EST


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